Sunday, October 5, 2014

As usual, I am late getting my posts out. I have some updates and some news to come in later posts, but first, I have an exciting event to share!
In the past, we have done the Buddy Walk as our awareness event. We have always been so blessed by the support we have received from our family and friends. Really -- it is quite humbling! I know that when God gave us Anna, he also gave us our wonderful family and friends and community.

Unfortunately, last year we were not able to participate because of conflicting schedules, and this year our local group is not having a Buddy Walk. :(

But, that lead us to come up with another fun awareness event - the Buddy WOD!! (Or 3x21 WOD for Awareness, or whatever you want to call it...)

So, on Wednesday, October 15 at 5 PM, Hackettstown CrossFit will be hosting its first Buddy WOD (Workout of the Day). This will be a "Bring a Friend Partner WOD", meaning, you do not have to be a member of HCF to join us for the sweaty fun. The workout is doable and can be scaled for all fitness levels. And, it's a partner WOD - which means you get to split the work with a partner. :)

The 3X21 WOD was programmed in a special way with significant reps and numbers (think 3 copies of the 21st chromosome).

If you want to want to join us for the workout, you just need to let me know so I can let the coaches know so they can plan accordingly. But, even if you don't want to do the workout -- please stop by and cheer on those who are sweating it out for Down syndrome! It is going to be a great event!!

Also, we have decided not to make this an official fundraising event, but I have had a couple of people ask me about organizations to which they could make a donation (You all are so generous!!). So, below are the links to three organizations that we feel are great causes, that help promote and support individuals with Down syndrome, and other disabilities, and help them to reach their full potential.

The Candle Lighters - this is a non-profit organization that supports the Arc of Essex County (NJ), and most importantly to us - Anna's school. They are kind of like the PTA for Anna's school -- but so much more!

Wednesday, September 17, 2014

So, I 'm feeling a bit discouraged today. I love our town and community. In fact, I just wrote about it. But, right now I am feeling let down.

Here's the story...

Anna goes to a private school for children with Down syndrome. Our local school district pays for Anna to go to this school because they don't have the services to support her needs. We are completely blessed to be able to go to this school, and it has been true answer to prayers. Unfortunately, the school is not close. Without traffic, it takes 35-40 minutes to get there.

Last year, Anna was the only student on her bus. She was being picked up around 7:45 - 7:50, and was making it to school, which starts at 8:50, with no problem. It was a long commute, but really couldn't get any better. On the way home, school dismissed at 2:40, and Anna arrived home no later than 3:30 each day, but usually by 3:20. Again, a bit of a commute, but still doable.

So, this year Anna started back to school on the 8th. The week before, the bus company called to tell us what time Anna will be picked up, and that she would be ride-sharing with another little girl that goes to school with Anna, but lives in another district. We are all for ride sharing. We get it. It saves the districts money. Plus, Anna gets a friend to ride with :) In fact, Anna shared a ride with a little boy all summer. It was fine. It added about 15 minutes to her commute, but nothing extraordinary.

Anna's first day of school this year :)

We are fine with ride sharing, except when it adversely affects Anna. And, unfortunately, this particular route is not working.

Anna's pick up time is 7:20 AM - 30 minutes earlier than last year. I could probably live with that if everything else was working. But, even before school started, we knew, and argued, that leaving at 7:20, they will never make it on time. The other little girl lives completely out of the way. We agreed to give it a week to see how it would work, but with complete reservations.

So, as predicted, Anna is getting picked up at 7:20. As soon as we see the van pull up, we promptly (as promptly as Anna moves that early in the morning, anyway - let's be realistic) walk out and load up. And, as predicted, Anna (and the other little girl on the bus), have been 10-20 minutes late to school each day. So, not only is Anna on the bus for almost 2 hrs, but she is also late to school --- everyday.

On the way home, the other little girl gets dropped off first. School starts loading busses at 2:40 PM, and Anna has gotten home no earlier than 4:10, more regularly 4:15- 4:20, each day. Again, over 1.5 hours -- everyday.

(Actually, Anna got home at 3:25 yesterday. The other little girl got picked up from school, so it was just Anna. There's a big difference between 45 minutes and 90 minutes. Anna was completely giddy when she got off the bus. )

So, what do we do? We have followed protocol and spoken with Anna's case manager about the situation. We have expressed how we are displeased that, not only is Anna, a 6-yr old girl with special needs, on the bus for so long, but that she is also not getting to school on time. We have expressed how this is affecting Anna. She is exhausted at the end of the day. I can barely get some food down her before she is laying her head down on the table begging to go to bed, only to get up (very early) and do it all again the next day. That may be fine for a grown adult commuting into the city, but NOT for a 6-yr old, and particularly NOT for a 6-yr old with special needs.

Anna at 6:30 last Friday night. She didn't even want to eat dinner.

Our case manager is wonderful, and sympathetic to our request. But, I was shocked by the pretty heartless and callous response that we got (from her higher-ups). Basically, the school district has told us that they aren't going to do anything. They said that Anna has to share a ride because of cost. They asked for bids from other bus companies but they were no better. Some of the other options they gave to us were: 1) go to a closer school (ummm - what school would that be?) and 2) drive her ourselves and they would actually pay us what they pay the bus company. AAAACCCKKK!!!

I am trying really hard to be calm and rational about the whole thing. I mean, comparatively, our issue is not that big. But it is big for us. And, we don't think that what we are asking for is unreasonable. We are happy for Anna to share a ride, just as long as the commute is reasonable for a 6-yr old with down syndrome, and she actually gets to school on time.

We understand about cutting costs and meeting budgets. Really, we do! But at what expense? My daughter's well being?

I'm not sure what to do next. I don't want ruffle feathers too much. We feel completely privileged and blessed to even be able to send Anna to this school, but I'm certainly not done fighting.
Ugh! When Anna was born, one of the things I was concerned about was that I am not an aggressive person and wasn't sure I would be up for fighting for Anna's rights. I hate that I have to do it. :(

So, what precedent and laws do I have on my side? Looks like I have some research to do. And some praying...lots of praying.

Tuesday, August 26, 2014

As I was growing up, my family moved around a lot...as in, I lived in 6 different states (7 different homes) by the time I was 12. Jonathan's family was the same way - moving around every 2-3 years.

So, it is very strange to have been living in the same town and same house for almost 10 years now.

Every now and then Jonathan and I talk about moving. But, each time we abandon the conversation when we start to think about all the things we would be leaving behind.

One of those things is our community. From our church family to neighbors, friends, and schools - we love our community. We especially love how our community has embraced Anna. They cheer for her, support her, and want to see her succeed as much as we do.

Anna started soccer today. I was hesitant to sign her up - not knowing how she would behave, or not knowing how she would react at all. But, a friend who was planning to coach encouraged me to sign her up so she could be on her team.

All ready for soccer practice!

The first practice went about as I expected. Anna was hesitant to join and was looking to do her own thing. But with some encouragement from her two wonderfully energetic coaches, we finally got her out there....And she did great!!

There was some screaming and fussing, and she tired out quickly. (And she is still suffering with her bowel issues - which I think was a huge part of her crankiness tonight.) But, she had a huge smile on her face at the end, and as I was tucking her into bed she said, "Soccer!" with a big smile. I call that a success!

Through all the screaming, etc. that she did, though, I didn't feel embarrassed or judged or out of place. Instead I felt supported and encouraged to have Anna included. (We'll see how the rest of the season goes -- it was only the first practice after all -- lol!)

So, thank you to our friends, neighbors, teachers, coaches, and church for being such a great support to us. God has blessed us abundantly!!

Anna and Daddy at one of our favorite community events - TSA night!

And speaking of supporting, we have a fun Down Syndrome Awareness event in the works for October that I will posting about soon. Be sure to check back for details!

Monday, July 21, 2014

So we have been in full potty training mode since April. When I last updated, things were going pretty well and we were getting ready for our big road trip.

To sum things up - things are pretty crappy (pun intended).

Actually, Anna is doing very well. She only had one peeing accident on our road trip, and it was due to a miscommunication between my husband and I about when she last went. Otherwise there have been no pee accidents in quite some time.

But -- the pooping is another story. To make a long story short, Anna has constipation issues. As per her doctor's instructions, we have been giving her Miralax to keep things soft and moving. But, for anyone who has ever dealt with Miralax, you know that finding the right dosage is not easy. Too little and it is ineffective. Too much and you get poop soup.

So we have been struggling to find that magic dosage for Anna. She will go weeks (yes weeks) at a time without pooping and this freaks me out so I up her dose. Then she will spend the next week just basically dripping poop all day long. I know -- gross!

We were in that poop dripping stage as we started vacation, so I decided to nix the Miralax. And we haven't given any since then -- so a full month now of no Miralax. But she is still just dripping poop!

I have no idea if Anna is able to control it, or if she is doing it on purpose. Or is there something physically wrong with her plumbing that needs to be seen by a doctor? I don't know, but I am so tired of changing her poopy underwear and I know Anna is really tired of sitting on the potty.

And to make matters worse, I can't take her swimming -- her all time favorite summer activity -- because I cannot guarantee that she will not poop in the pool. :(

So, things are pretty frustrating right now, but we are trying to hang in there.

Please pray for some sort of potty training break through soon because I'm "pooped"!!

Anna swimming in Lake Huron. We have to stick to lakes and oceans in case she poops :(

Update: Oh the power of prayers!! So, not more than 10 minutes after posting this, I went to check on Anna who I could still hear awake. I walked in her room and she told me that she needed to go potty. So we sat on the potty (again) and she proceeded to poop...a lot! I could tell she felt so much better -- but she screamed through the entire ordeal.Anyway, the next day was much better. No messy underwear! And after dinner (which is her normal time to poop) she proceeded to squeeze out a few nuggets. I am sure our poop drama is far from over, but hopefully things will calm down for a little while to give this momma a break!

Friday, June 13, 2014

I have to admit, I am pleasantly surprised by how well it is going. Sure, we have an accident here or there, but that is to be expected. For the most part, however, things are working.

But -- that is maybe because I am so paranoid of Anna having an accident that I take her about every 1.5 - 2 hours. I am sure she can go longer, but just find it easier to take her, than to change her after an accident. And, pretty much every time I take her she goes - so it is not like a wasted trip.

Also, since mid-April we have spent just about every evening and weekend at baseball and softball games. Talk about a potty training challenge! Some ballparks have adequately clean facilities. But others -- gag!! I would almost rather Anna have an accident than have to take her into one of those port-a-potties.

But we are persevering and rewarding ourselves for a job well done so far! :)

Our next big potty training challenge will be when we go on vacation. We will be traveling by car, and I have no idea how frequently we are going to have to stop to avoid accidents. And should I put a plastic bag or a towel on the seat of her carseat just in case? We will be pulling our camper, so finding a potty will not be an issue -- we just have to pull over. I am sure this will make for an interesting update when we get back. :)

Wednesday, June 11, 2014

So, Anna's school had a small fire two weekends ago. Fortunately nobody was injured and there was no real fire damage. But, there was a lot of smoke damage that prohibited them from opening the school.

So, last week, Anna got an unexpected break from school.

We tried to make the most of it. We visited her friends at her old school. We got her glasses fixed, and we watched a lot of ballgames! But we also got to go to lunch with Daddy.

And help make me make dinner.

And she got to sleep in! I am pretty sure this was her favorite :)

She is back to school this week. They are in a temporary location until the end the year, and then hopefully back in their regular building for the start of the summer session. Please keep them in your prayers that all works out!!

Tuesday, June 10, 2014

Paige played softball and Charlie played baseball on two different teams this spring. And, it was Jonathan's and my first foray into coaching. So - needless to say we have had a busy spring!

Both kids have had a great season. They continue to improve their skills, but mostly, they are having fun and enjoying the sports they are playing.

Poor Anna gets dragged to all of Charlie and Paige's games (which was just about every night between the 3 teams), but it is nice to see that she has picked up some skills from watching all those ballgames!

Wednesday, May 21, 2014

Anna is a completely different child when she is at school. Happy, comfortable, cooperative...a far cry from the "No! Stop it! Sorry!" that I get regularly at home. - lol! (She is improving, though. So my ego isn't completely shattered yet.)

Her teachers and therapists are working miracles (Okay - maybe not miracles -- but it sure seems like it at times) with her. They know what they are doing, how to get results, and won't settle for anything less. And, Anna is happy to work for them!

We were quite pleased with our recent IEP meeting. Anna will continue getting all the services she needs, and then some - even throughout the summer. She has made such great progress in so many areas. It can be discouraging to see goals and evaluations on paper, but it can also be so encouraging when you see the progress in black and white.

Anna and the cuties in her class on the day I went to read :)

We continue to praise God for his blessings. Anna is going places - just you wait! :)

Monday, May 12, 2014

Confession: Anna is 6 yrs. old and not potty trained.
Confession: I don't really care.
Confession: But I do care because it is kind of a pain at times.

So -- We have jumped in feet first! We are in full on potty training mode.

Anna's teachers told us it is time, so we are going with it.

We have tried to train before, but Anna just wasn't ready. Her behavior was very resistant and she would have an accident 10 minutes after having just gone on the potty. So, we waited.

After several months of consistent performance and control at school, we have decided to push her a little farther. For two weeks now, Anna has been wearing underwear during the day. She gets taken to the potty on regular intervals, and for the most part has been staying dry. She had a few accidents when we first started, but seemed to be getting the hang of it. Even on the weekend when there is no routine and our schedule is fast and furious going from one game to the next she was doing well.

And then, it was Mother's Day... After almost two weeks of "getting it". After almost two weeks of me feeling proud and successful. After almost two weeks of being "Mother of the Year" -- Anna blessed me. And by blessed me, I mean she peed on my lap...twice...on Mother's Day. -- sigh

But, we got right back to it. She had a great day at school yesterday and today looks promising.

I mentioned that we still have a long road ahead - but at least it is the right road!

Friday, April 25, 2014

Bandit is a spunky terrier mix that we adopted just after Thanksgiving. He has definitely been a fun addition to our family -- and the one sure-fire solution to cheering Anna up when she is being a cranky pants - ha!! :)

Wednesday, April 23, 2014

So, I haven't given an update on how Anna's new school is working out. Not because there is nothing to report. I just haven't taken the time to actually write a post about it.

I can sum it up with this: So much progress, but there is still a long road ahead!

Anna joined her new school at the end of October. It took her a couple of weeks to accept and fall into the new routine they were introducing to her. But, right away, we could see the impact. Anna is still a stubborn mule, but her resistance to transitions was much less. Her teachers encouraged us to to keep reminding Anna of the end goal, or "prize", be it a video, a trip to Dunkin Donuts, or whatever it is that she is looking forward to. Not gonna' lie, I often feel like Dora repeating our three steps to get to where we are going..."Potty, Shoes, Playground! Say it again! Potty, Shoes, Playground!!"

Then came the holidays and winter. I don't think Anna had a full week of school from the beginning of December to the end of February due to holidays, snow days and illness. And boy, could you tell that the lack of routine was affecting her! The lack of routine and her never-ending winter cold really took their toll on her energy and attitude (not to mention mine!!). But let's face it...this winter sucked!!

Since March, however, Anna has been going full-time, and again, her growth and development are noticeable.

I have been to her school a number of times for various reasons, and it is pretty amazing. Anna is a completely different child at school. She is calm and seems so comfortable and under control - not to mention happy! It is really a beautiful sight for this Mama who witnessed the chaos of her first couple of months of kindergarten.

We got to go have lunch with her on her birthday (and see that she really does have manners and know how to use her napkin!). They had a little celebration for her that was really sweet.

Then we stayed for a couple of her therapies. What an eye-opener those were! Anna has definitely been holding back on us! Anna was saying full sentences for her speech therapist and the pride on her face was priceless!

Anna's PT has also been giving Anna great reports in her communication book. One thing that Anna has been working on and has finally gotten the hang of is riding her trike! I am so thrilled about this! I think she rode her trike for 5 hours one day when we were camping last weekend. :)

So - definitely progress and growth! We are so thankful for our prayers being answered and for Anna finding a place where she can thrive.

However, as we embark on the adventure of potty training this week while she is home for spring break, I am reminded of the long road ahead. But, I am feeling a lot more confident that we are on the right road this time. :)

Tuesday, April 22, 2014

I love Easter! I think one of my favorite parts about Easter is how pretty all the girls look in their dresses and how handsome the boys look all suited up. :)

We had a great weekend! The kids had off Friday and Monday, so we decided to go camping. (Check out "That's How We Roll" blog for more details on our camping trip.) We came back for Saturday night so the Easter Bunny could find our baskets on Sunday morning -- and so we could all have a shower before church - lol!

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Anna Banana Pants

Anna Banana Pants is our third child who has a little something extra...an extra 21st chromosome. Having a child with Down syndrome is not the life sentence that many believe it to be. In fact, it is the probably the greatest blessing we have received as a family. This blog is about Anna, and our everyday family life.